Showing posts from August, 2009

Good things.

There are very few times I'm glad I have CF. But now and again, nice things do happen. It's almost as if someone is saying 'Hey, sorry you got stuck with these sucky cf genes.'

At the top of my 'nice things' list, is obviously getting to go to London courtesy of Make-a-wish. (Although does it make me bratty if, when I look at the 'make a wish' site, and I see that they haven't included my wish in the 'latest wishes' section or the 'we had a wish' bit, I feel a little peeved. Hell, my wish was awesome, and I'd really like to share that story on the site). But, there is another totally awesome thing that has happened, that I haven't blogged about as I didn't want to jinx it. After all, it has only been confirmed in the last week.

I applied to a CF further education grant fund, called the 'Joseph Levy memorial fund'. Its where people with CF who want to pursue further education (i.e. college or Uni) can apply and ask…

Long overdue London pics.

Here are the pictures of me in London! I know they're long overdue, but I just never got round to... uh... copying the pictures that I wanted from one computer to my laptop. I know, I'm a shameless procrastinator.

The link takes you to the slideshow of the photos. There's probably about 30 of them, so not as many as the scenery pictures. But these ones show me doing everything from being on the tour bus to eating in the Hard Rock Cafe.


Soon to be a college girl.

I'm an apparent horrendous blogger.

I got my A level results on Thursday. I did good enough to keep myself happy, and bought myself some new boots that I love. I didn't need my results to get into the college course I chose - the original course, I didn't get into because I didn't have a more specific photography A level, and apparently just 'Art' isn't specific enough. So I'm doing a different photography course which is only Saturdays, for about 6 months. There is a following course right after this one, for a further 6 months, and the qualifications I'll get from these courses, I've been told, will let me get into the course I originally applied for, in Sept 2010, no problem. So, I'll have Sunday - Thursday to doss about, Friday dedicated to my new job (Yessssssssssssssss!) and Saturday for college.

Oh yes, I got a job :) Its cleaning some holiday cottages in the country, about a 20 or 30 minute drive away, so not too bad. I'm getting…

IVs and updates.

I don't have much to update on, or even anything to ramble about. I know that Bree is doing really well now, and has written her first post-tx blog post! I got my medical exemption certificate, which now means that I don't have to pay for my prescriptions because I have a port (even though not all doctors agree that a port-a-cath is a 'indwelling fistula device'). They haven't yet got CF as an official claim for medical exemption, but there's another 5 years till I need to get this renewed. I hope they get a move on though; its ridiculous how much we get from the pharmacy, and even more ridiculous if you have to pay for it all, seeing as you hardly asked for this illness.

I officially cannot wait to get these IVs finished. I had actually hoped they'd do a bit more for me (in other words, I'm still coughing probably just the same amount, but its less 'death rattle' now). than they have so far. I suppose I can hope that the last day or so will bri…

Oh Colistin, how I've missed you.

I started IVs on Wednesday (Colistin and Ceftaz) and I felt the effects of colistin pretty sharpish. After one day, they started to kick in, which also means that my IVs are swimming about inside of me and hopefully fixing what they can. However, I can't say I've missed the numbed/tingly mouth feeling or the dodgy legs that almost made me fall both up and down the stairs, but I think these IVs are definitely already working. I slipped off my mountain sized pile of pillows the other night and didn't cough myself stupid, so thats a sure sign that it's helping. Plus, when I did my lung function at the clinic, it actually increased. By about 2%, but hell, its an increase. This was even before I was hooked up to the first dose, and you'd expect them to be a bit on the crap side seeing how my lungs have been fairing these past few months (mainly pleurisy, but there was the fact that after my IV dose with mero, I needed IVs again a month later. I hate that stuff.)



Bree told me on MSN, literally 10 minutes ago that she got the call 16-ish hours ago (about 1am her time) and she'd been waiting at TGH (her hospital in Canada) for the go ahead. Last I heard, things were positive and a very hungry Bree was anxious for new lungs!

I'll keep an eye on Facebook for any more updates. I swear I have literally no words. I was speechless when I found out, and there were lots of tears of happiness! Bree, you really, truly deserve new lungs!
UPDATE: Bree went into surgery at 7.30pm EST and came out at 5.15am. The surgery went well and she's in recovery. Bree's blog is here. Hopefully her Mum will be updating her carepage site soon. (To read the carepage site, you will have to sign up. Worth it for any updates though!) Knew you could do it hun, I'm SO excited for you!UPDATE II: Bree is awake, but still has the vent and other various tubes. Obviously she can't talk b/c of the vent but she can write :D Apparently she as…

My CF 'firsts'.

Because I'm a shameless copy-cat, and have piss poor ideas for blog posts these days, I'm going to write a list of my 'CF-firsts'. Thanks to Piper, because I pinched the idea from her blog.

CF Firsts

Diagnosis: When I was 3 months. They'd done a sweat test to check but I don't know what my result was. They probably had an inkling from the menocum surgery I had at 1 1/2 days old. Y'know, maybe.

First CF Doc: I had two CF doctors in the CF paed outpatients - Dr O'Brien and Dr Spencer. They were never very nice to me if I'm honest. (Thus, the attitude begins...)

First CF Friend: My first hospital stay when I was 6, I was put on a ward bed, in between two older girls with CF. I would watch them swallow their tablets and their enzymes each morning, and they'd sit on my bed and talk with my and my Mum. I remember one of the girls was definitely called Lyndsey. And when one of the girls left the hospital, another CF girl came in and got her bed (and she kn…

Happy birthday, me.

Yey! I'm 18!

...That's all. Just felt the need to shout about it! =)